Messages to others

We asked grandparents what messages they would give to other grandparents, or health professionals. Some of the messages were very similar. They wanted to let other grandparents know that there was light at the end of the tunnel and that things did get better. In their experience, time helped, both in accepting “the unexpected” and in finding the right forms of support. For health professionals, the main message was that a greater understanding of and awareness about autism spectrum disorders was needed. They called for more open and sensitive communication. Even if the news wasn’t always positive, it could always be communicated in an empathetic way.

Janet is married and is a retired waitress. She has several grandchildren. Ethnic background/nationality: white British.

From that perspective from health professionals I think... just as an instance, my grandson put, he’d got the bath sponge in the bath and he’d pulled a little piece off and put it up his nose, and this caused a problem and we had to take him to A & E. And it was just horrendous the performance we had with the doctor that was on duty in A & E because, “What is this autism?” He was a foreign gentleman. “What is this autism? I don’t understand? “And you just wring your hands, you know, just feel so frustrated because, so there’s not the understanding. I don’t think there’s enough knowledge among health professionals. I mean if it’s their field like the paediatrician, the consultant paediatrician that diagnosed them, yes.

But my grandson had a fall recently, and broke his leg, through an accident at one of the play centres in our local town. And... my daughter took him to, no my son-in-law took him, because my daughter had a yoga class, and my son-in-law took him to A & E because it was too late for her to cancel this, the class that she was running. And they immediately alerted Social Services, because they said it didn’t look like a regular accident, and my son-in-law couldn’t explain the situation enough.

So that was a bad situation to be in, because, but my son-in-law did say that we could, he could produce an accident report from this place where the accident had happened, and because he had a fracture and had to have a pot from thigh to toes... it was sort of distressing for [grandson’s name], but it was distressing for my son-in-law as well. Because as he said, he said before he left, before my son-in-law left with my grandson that he would have to inform Social Services, and they would be investigating and he was just [small laugh] you know, well if you have to do that, you have to do that, he said to the guy. But he said, “You know, I can assure you that it was an accident.” You know, he said. “Well this is normal procedure, we have to do this, so...”

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Age at interview:

57

Sex:

Female

Background:

Helen lives with her husband. She has two daughters and four grandchildren. She works as a counsellor. Ethnicity/nationality: White British.

And would you have a message to health professionals. I know you didn’t have a good experience?

Yes, if you don’t like parents and children you shouldn’t be in the job. That would be number one.

Yes.

Two is a bit of empathy about when you’re going to give, give people terrible news about their children, life limit… I mean either because they’ve life limiting diseases like cancer, or life, in a way life limiting conditions, like autism. They should be as a bare minimum a counselling support sitting there waiting to pick them up on the way out with tea. They might not want it, they might not want it then. But then that person should have the, maybe not, you can’t offer 24 hours, 24/7 it’s not the Samaritans, but you know, a reasonable amount of time, Monday to Friday where that person would be available.

When the parents have assimilated, began to assimilate the news they could pick up the phone and say, “We’re in a terrible mess. Can we just come in and talk to you?” Or the person would go to their home. I mean just, it’s … something has to happen. You can’t do that to people. You can’t give them that news about their children. And not, and then not care for them pastorally. It’s most extraordinary encounters. I can’t imagine anything done much worse really. Except giving somebody the news that they’ve got cancer, and then just walking out the room, which is pretty much, almost what they did.

And also just the negative, just the negative string of stuff they said, “Oh well he can’t do this, and he can’t do that, and he can’t do the other thing.” Nobody said a single nice thing about him. If any of them had prefaced the, their story about how they’d found him with, you know, and used his name, “He’s a dear little boy, and we noticed that he could do these things. In the normal range of ability we’d expect him to be able to do those things, and it was sad that we didn’t see those things...

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Age at interview:

64

Sex:

Female

Background:

Jan has one daughter. She also has three grandchildren; one granddaughter and twin grandsons aged ten and eight respectively. She has retired from her job in social services management. Ethnicity/nationality: White British

Oh I think my message is the one I’ve said really, that, be straightforward, don’t mess people about. Tell them the truth and when you say you’re going to ring back, ring back even if you haven’t got the answer. I don’t think I ever realised the extent to which people are hanging on your words. You know, if you said oh I’ll ring you back on Monday. Okay so you’re busy on Monday, you know, you’ve got 15 other million things to do. So you ring back on Tuesday, and you’ve forgotten actually that person is thinking, oh she said she’d ring back on Monday. And yes, I think being straightforward.

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Age at interview:

59

Sex:

Female

Background:

Jan, a social care trainer and consultant, has two children and two grandsons aged 10 and 5. She lives with her husband. Ethnicity/nationality: White British.

Yes. I mean I think okay, we’ve had the aiming higher agenda for the last two years, two or three years and I think that’s been really key in advancing the greater inclusion of disabled children within our society. I’m really worried that with our new government we might move back towards looking at children more from the medical model, and that we might go backwards again with inclusion. I am a great believer, that, you know, the earlier that children can be included and the more they can be included the better. It has got to be though with the right support. Inclusion doesn’t work if children aren’t supported and don’t have the right resources. So that’s what I would be asking for and in terms of health professionals, I would be saying very much that these aren’t children aren’t ill [laughs]. And it’s about seeing them from the social model and social perspective and looking at how as health professionals we can support them to be included in what other children do. That’s my main message.

Helen lives with her husband. She has two daughters and four grandchildren. She works as a counsellor. Ethnicity/nationality: White British.

Well if you’re listening to this and you’ve just discovered your grandchild is diagnosed and they’re still quite little, they are only may be two or three, now I’d want to say that there is a light at the, at the end of the tunnel. It’s a different kind of light from the one you might have been expecting. So it’s not that you’re suddenly going to come out and everything in the garden’s going to be great, because it isn’t. And I’d be a liar to say that that was true, but it is a bit more like somebody once said, “You thought you were going on holiday to Holland and actually find yourself in Spain. Or maybe you thought you were going to Spain and you’re actually ending up in Iceland. But you end up, you’re ending up in a, you’re on a journey to a different place. You don’t actually probably even know where the destination is. You thought you were on one kind of journey with a grandchild and it’s now not going to be quite like your fantasy, but it isn’t going to be all bad. There will be loads of laughs along the way. It will be sometimes a bumpy ride, but you start to celebrate the small things.

So whereas your neurotypical grandchildren might learn to play the piano or go and play in a football team and all that’s marvellous and they learn the nine times table and you’re over the moon. Your child, grandchild might learn to eat with a teaspoon but you’ll get as a big a kick out of that as you will out of your other grandchild going to join the football team. And so you learn to celebrate the tiny achievements and they are glorious. And we have had great fun in, when we hit those little milestones. We say, “Yessss!”

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Age at interview:

57

Sex:

Female

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Sally is married and has two daughters and four grandchildren. She works as a Church Pastor. Ethnicity/nationality: White British.

And what would you tell other grandparents that it was like to have a grandchild that’s got autism?

In some ways, it is this extra dimension of, of life, it’s a different outlook and to try and look at that in a very positive way, to you know, there are difficulties and sometimes you’ve just got to stand back and let the difficulties happen and sometimes you feel you want to cure everything to make everything right, and of course that can’t be done, and to sometimes stand back and let things, let things go. And let them, you know, find their own way of doing things. And to respect him for his way of, you know, his different outlooks. Not to say to him, “Well you mustn’t do that. That’s not the way behave.” And say, “Well you know, that’s the way you do it. This is not the way other people do it.” And you know, to respect him for his difference.

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Age at interview:

65

Sex:

Female

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Janet is married and is a retired waitress. She has several grandchildren. Ethnic background/nationality: white British.

Not really. Just... as a grandparent, my grandson, it was our first grandchild, so I was asked by my daughter and son… well my son-in-law first and then my daughter, if I’d like to be present at the birth which I was, and that was such an experience. And then you watch this little baby develop, and then this autism kicks in and it was just devastating really, but to any grandparent out there, just don’t let it hold you back, you know, just don’t be negative, you know, just be positive all along the line, and don’t think about, I mean you have to think about the future and what will happen, but that’s really down to us.

But as grandparents just give your children the support and give your grandchildren all the love and support you can, and just be positive and get whatever help is out there. And talk to as many people. I’ve just found myself waffling on for hours to people. I met a young man on the station today while I was waiting for you to arrive, and he worked as a, he works in health care with elderly people at a care home, and, and we sort of got talking about this subject. So as grandparents if you feel you want to be involved and just get involved, and just don’t see the black side of it, the negative side, just accept the children for what they are, and just love them and give them care and attention, and give the attention all the help and support they need as well.

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Age at interview:

57

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Female

Background:

Helen lives with her husband. She has two daughters and four grandchildren. She works as a counsellor. Ethnicity/nationality: White British.

So I think, another message for people if they listen to this, it will be don’t take the rubbish, you know, if you’re not capable of writing the kind of robust letters that need to be written, then find somebody who can. Because it’s, we have to challenge the system. We’ve got to fight for these children and we’ve got to fight for these mums and dads and, and other kinds of carers. I guess there’s lots of foster carers who are fighting the system, because their mums and dads couldn’t cope with the children or whatever. There may be grandparents who are coping with their grandchildren because their daughters and sons couldn’t cope with these children.

But we have to fight the system. We’ve got to get better at this. The professionals have got to be held to account. They cannot go on treating people like this. And it’s no good if we all roll over and just say, we’re not going, we’ll put up with it. We’re afraid of rocking the boat. We need to rock the boat. We have a duty to care for these children and we have a duty to fight for them because they can’t fight for themselves.

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82

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Female

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Dorothy is a retired teacher. She lives quite close to her daughter and two grandchildren. Ethnicity/nationality: White British.

And how would you tell another grandparent that was in the same position as you what it was like?

Well I would just really tell them my experiences, and tell them that the principles that we’ve used of ABA do work really, I think. That you can calm a child with a tantrum. And, as I say, if ultimately you can’t calm the child then you can deal with the… I mean if the child’s having a tantrum at home, it doesn’t really matter, you can take all day to sort it out or you can, you put it on extinction which another of the methods used in the ABA therapy of totally ignoring if a behaviour, because I think a lot of parents, make too much of bad behaviour sometimes by reacting extraordinarily to it. You can sometimes best deal with bad behaviour by putting it on total extinction, that it doesn’t exist, this bad behaviour. We don’t respond to bad behaviour in any way at all. And you get the child who wants any kind of attention, even to be told off for something. So ABA does use this extinction you know, ignoring bad behaviour, by, by distraction, you know, not by there being silence but by distraction. Turning to something else totally different. You haven’t even heard that terrible noise. And you know, there are lots of very useful devices to save your own frayed nerves as well as calming the child. So again distraction is very good.

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Age at interview:

64

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Female

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Rebeccah is a retired charity consultant. She lives with her husband and has two sons and two grandchildren. Ethnicity/nationality: White British.

And how would you summarise your experience as a whole?

Obviously, initially totally unexpected. It wasn’t anywhere in the dreams you have when you’re told there’s a grandchild on the way. ...Unexpected turning or morphing into obviously distress for their sake and for your own children’s sake. The parents sake. But I think optimism too. It’s not over till the fat lady sings, you know, you’ve just got to be optimistic. If you lose that sense of optimism you’re no good to support the family and you’re no good for yourself, but it is a hard row, and I’m not making light of that. It’s a very hard row, because very often people with Asperger's Syndrome have other siblings with other problems too. I’ve noticed that coming up in, you know, when I’ve met people in that circumstance. So it isn’t easy, but then no one said you were getting an easy life really. I would have wished it to have been otherwise but it’s not a problem, as long as I can do what I can do and if he, as long as he’s happy basically that’s what’s important.

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Age at interview:

59

Sex:

Female

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Jan, a social care trainer and consultant, has two children and two grandsons aged 10 and 5. She lives with her husband. Ethnicity/nationality: White British.

It does get better. I’ve actually just thought of another friend that I have actually who’s got an autistic daughter, who’s now, oh she’s about eighteen, and I didn’t meet her, this particular friend until about three or four years ago, and she was saying it does get better as they get older. It does get easier. And it is very true actually. It’s certainly has been true for her daughter and it’s been true of mine. So it’s about be optimistic. Look at the positives. There are so many, I mean, yes, there are negatives, there are things that you do miss about the fact that your grandchild is not as other children. But there is an awful lot of positives, they’re very interesting and fascinating children. And these days it’s not a big a deal I think as it was back in the fifties, sixties, seventies, but that son or daughter will really, really value your support. But you should give that in the way that you do as a grandparent anyway. You know, the help with childcare. Having them to stay occasionally, that kind of thing. It isn’t really any different. It’s just they’re probably going to need it even more.

Because I know we’re quite lucky with [grandson], I know there are lots of autistic children that do, don’t sleep as well or don’t eat as well, but so therefore, you know, their son and daughter will need that break perhaps even more. But it’s very important that we’re there, I think, to support them. And you know, kids just, they’re going to be just as fond of their grandparents, and want their grandparents as much as any other children aren’t they? So it’s a very important relationship I think for grandparents.

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Age at interview:

56

Sex:

Female

Background:

Brenda has two daughters, two stepsons and four grandchildren. She lives with her partner and is a Student Services Team Leader. Ethnicity/nationality: White British.

And how would you tell another grandparent what it was like to be the grandmother of a child like him?

Oh I suppose again, depending on the relationship they had with their grandchild, just to remember that it’s not him being naughty or horrible, and what he says he doesn’t mean it. Just accept him that there is something wrong that is making him like this. And I think to anybody I think it’s just understanding that he’s not doing this to hurt you or personally. He can’t help the way he is and I think you know, as he gets older, hopefully what’s put in place is for him to learn how to control that as well. So that’s all I can say to grandparents, you know, go along with it, see how it is, and you know, perhaps get some help and advice on how to handle different situations. And I don’t think, you know, you could always say this is how I did it and this is how it all worked because they’re two different children aren’t they, so it wasn’t always what’s one suits the other. I don’t think it will ever be the same.